Home Health Care Research for Children With Disability and Medical Complexity

Pediatric home health care represents a vital system of care for children with disability and medical complexity, encompassing services provided by family caregivers and nonfamily home health care providers and the use of durable medical equipment and supplies. Home health care is medically necessary for the physiologic health of children with disability and medical complexity and for their participation and function within home, school, and community settings. While the study of pediatric home health care in the United States has increased in the last decade, its research remains primarily methodologically limited to observational studies. Dedicated funding and research efforts are needed to transform American home health care research to address multifaceted outcomes valued by families and providers as well as payers and government programs. In this paper, we review the recent literature in pediatric home health care and then propose an actional agenda that could address its missing evidence base. We posit that pediatricians should partner with family caregiving experts and patients to advance knowledge about child and family health outcomes, home health care use, new models of care, and optimal approaches to education and training while also considering meaningful approaches to address disparities. The creation of an American pediatric home health care data-sharing consortium, patient registry, and reproducible access and quality measures is also needed. Most importantly, efforts should center on patient- and family-centered health priorities, with the goal of ensuring equitable outcomes for every child and family.